13 Things to Keep in Mind as your Child with ASD Reaches Adolesence

This is a post I came across and have provided below. The contents are from another blog, and were not written by me. However, there was such great information, I wanted to share it on my blog here:

http://autismcollege.com/blog/2012/03/02/13-things-to-keep-in-mind-as-your-child-with-asd-reaches-adolescence/

13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence
by Chantal Sicile-Kira posted on March 2, 2012

"Lately, I’ve been getting lots of emails emails with questions from parents and educators about the teen years. “Help,” they write, “my son’s autism is getting worse!” That’s what it seems like when puberty hits! So I’m reprinting this article about adolescence that first appeared in the Autism – Asperger’s Digest. The article appeared a few years ago, but the worries and challenges faced by parents are the same as they were when I wrote it.

As well to provide an opportunity for parents and educators to have more indepth information, I’ll be giving a course on Adolescence through Autism College beginning Monday March 5, Tuesdays March 13& 20, 6-8pm PST (9:00-11:00 EST). Participation is limited so that participants can have time to ask questions and get advice. Click here for a description, Click here for pricing and to enroll. Questions? Emal me at Chantal@AutismCollege.com.

13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

Living with a child on the autism spectrum day after day, parents often miss the little changes that are so typical of all kids’ development. One day I looked at my son, Jeremy, and realized he was already up to my chin. And what was that – facial hair? His behavior started to change as well. As a young child he’d always been compliant; we spent years trying to teach him to say “no” and mean it. So I was thrilled when he just didn’t want to do what we wanted him to do anymore.

Autism and adolescence: each on their own can be interesting and challenging, to say the least. Together, they form a volatile mix that can arouse daily anxiety in even the most prepared adult. If you live with or work with a pre-teen with an autism spectrum diagnosis, attention to the following 13 points can help you and your child navigate those years a little more smoothly. One caveat: it doesn’t matter the functioning level of your child with autism or Asperger’s; everything here applies. You’ll work them out differently depending upon his or her cognitive, emotional and/or communication abilities, but don’t overlook them, thinking they don’t relate to you child. They do!

Noncompliance: it may not be autism, it may be adolescence. Whether or not they have autism, there’s a definite ‘shift’ in behavior and personality when children turn into teenagers. Wanting your attention changes to wanting their independence. For kids on the spectrum, this behavior change may look like non-compliance; they don’t follow through on your requests as before. But it’s actually a normal part of their development, entirely aside from their autism. As a parent it’s important to support your teen as he struggles to become his own person, and even though it may be hard to appreciate, this is a positive development. After years of being taught to do as he is told, your teen needs to start learning that it is acceptable at times to say ‘No,’ or he might find himself in dangerous situations with peers or others looking for an easy victim to prey upon.
Teenagers need to learn to make their own choices. Giving choices to your growing teen will teach him about decision making and accepting the consequences of his choice (good and bad), as well as help him realize he will eventually have more control over his own life. This applies no matter what the functioning level of the child. Offer him choices, regularly, and abide by the choice he makes. Remember, as he gets older he will want and need to be more involved in his life and his transition planning. By letting him make choices now (within your parameters at first) you are teaching him valuable life skills.
Chores teach responsibility. At any age, it’s good to teach children that being part of a group (whether it is a family, a work group, or a community) brings with it a certain level of responsibility. If your pre-teen has somehow been exempt from chores and group responsibility, let this slide no longer. Teens need to learn that living in a house with other people entails responsibilities as well as pleasures. Chores teach the teen to be responsible for himself, to live independently, as well as foster self-worth and self-esteem. ALL individuals with autism can be taught to contribute at some level. Do make sure your child has opportunities to do so.
Watch out for seizures. One of every four teenagers with ASD will develop seizures during puberty. Although the exact reason is not known, this seizure activity may be due to hormonal changes in the body. For many the seizures are small and sub-clinical, and are typically not detected by simple observation. Some signs that a teen may be experiencing sub-clinical seizures include making little or no academic gains after doing well during childhood and preteen years, losing behavioral and/or cognitive gains, or exhibiting behavior problems such as self injury, aggression and severe tantruming.
Talk to your child about his/her changing body. Imagine how scary it must be to realize your body is going through some strange metamorphosis, you don’t know why and there is nothing you can do about it. Whether your child has Asperger’s Syndrome and has sat through hygiene classes at school, or he is more impacted by autism and you’re not sure how much he understands, it is important to discuss the changing male and female body in a simple way he can understand. Otherwise, your teen may be overly anxious and agitated when she starts menstruating or when he has wet dreams. Visuals that include photos or drawings and simple words may be helpful, especially at the beginning. Be concrete and don’t overwhelm – this is certainly not a one-time talk!
Masturbation: a fact of life. Let’s face it; masturbation is a normal activity that almost all teenagers engage in. Once discovered, it is an activity hard to stop, especially for individuals who enjoy self-stimulatory activities and can be obsessive compulsive, as are many people on the autism spectrum. The best approach is teaching your teen that this is a private activity to be done only in private at home, in a designed place such as his bedroom.
Relationships and sexuality: topics that need to be discussed. Sexuality is a topic that most parents are not comfortable discussing with their children, even their neurotypical teens. However, it is necessary to talk to your teen on the spectrum about sex and the many types of relationships that exist between people. It is naïve of parents to think that because their child has autism s/he won’t need this information. Teens talk, and invariably your child will be hearing about it from their NT peers at school. Whatever the functioning level of your child, he needs to be taught about appropriate/inappropriate greetings, touch and language when interacting with members of the opposite or same sex. Don’t leave this important part of his social-emotional development to locker room education.
Self-regulation is important for life as an adult. An important skill for every teen to learn is the ability to control his or her reactions to emotional feelings and sensory overload. Hopefully, by the time they are teens your child or student has learned to recognize their feelings and impending emotional or sensory overload, and ways to handle the situation. In school this could mean practicing self-calming techniques or signaling to the aide or teacher they need a break and having a ‘safe place’ or quiet room to go to. At home, teens should have their own quiet spot to retreat to when overwhelmed. And parents: respect their need to do so!
Self-esteem is the foundation for success. While children are young, start building this foundation by emphasizing strengths rather than weaknesses. If your child with ASD, no matter what his age, has low self-esteem pay attention to the messages he is receiving from people around him at home, at school and in the community. In all likelihood, the message he is hearing is that he can’t do anything right. Teens need to be told when they are acting, responding and communicating appropriately, as well as that their (considerable) efforts to do so are appreciated. Where there are challenges, it is up to us, as the adults in their lives, to help them find strategies to be effective. Teens can be at high risk for depression. Parents should ensure their teen knows they are valued and loved under all circumstances, not just when they ‘get it right.’
Self-advocacy is required for independence. Eventually your teen will be living away from home and will not be under your protection. He needs to know how to speak up for himself. Start this training while he is in school. IDEA 2004 mandates that students be invited to participate in transition planning and this supportive environment can be good ‘training ground.’ Make sure your teen is aware of his strengths and weaknesses and how he is different from others. In this way the teen can gain a real-life understanding of areas he may need to improve upon or that require assistance from others, and areas in which he is proficient, or that are his strong points to build upon.
Bullying is a serious problem and should be treated as such. Bullying can range from verbal taunts to physical encounters. At any level it is not an individual problem, but a school problem. Unless your child’s school strongly enforces a no-bullying policy from the principal on down, your teen may have a difficult time. Teens on the spectrum are poor at picking up social cues, understanding ulterior motives, sarcasm, and predicting behaviors in others. As such, they unknowingly put themselves in unsafe situations. At other times their unconventional grooming or dress, often stilted language and rule-bound obsessions can render them targeted victims. Ensure your teen learns the meaning of non-verbal behaviors and the hidden curriculum (i.e. the unstated rules in social situations). Enlist the help of a neurotypical teen or sibling when shopping for clothes or getting a new hairstyle so your teen has at least a semblance of ‘fitting in’ with his peer group.
The Individualized Transition Plan (ITP) is your teenager’s business plan for the future. Second only to the early intervention years, the transition years in high school are the most important years in your child’s educational life. Skills your teen needs to learn to survive and thrive as an adult, in adult settings, should be the focus of this time in school. The ITP, mandated through federal special education law, is the roadmap for your teen’s future. Once your child graduates or ages out of high school, mandated services are few and programs have waiting lists that extend into years. Spend time (and include your child as much as possible) thinking about what he wants to be doing when high school ends, and 5-10 years from now. Then plan how he will get there and what skills will be needed. This “futures planning” should drive the goals written into his IEP.
Parents, you need to take time out for yourself; it’s good for your child too. With all the responsibilities you have as a parent of an adolescent on the spectrum, you need to take some time out for yourself. Whether it is a short break you take every day to go for a walk, exercise or engage in a favorite activity, or a weekly evening out with your significant other, you need to recharge your batteries. This is also positive modeling for your pre-teen and teen. It teaches that life can be stressful and overwhelming at times for all of us, and that we need to develop ways to manage our stress, and enjoy life, not just l
Just the other day I was looking around the house for Jeremy. I knocked on his bedroom door. He opened the door a crack, one of his Guitar World magazines in hand. I could hear Dave Matthews playing in the background. “Go away, Mom,” he said, and I did, with a little smile on my face. Jeremy is significantly impacted by his autism. Yet moments such as this remind me that he is first and foremost a teenager, with his own personality, his own wants and wishes. He’s on the road to becoming his own person, figuring things out in preparation for adulthood. I wouldn’t have it any other way."

"Why My Kid Isn't Like You(rs)" Isn't the Point

I found this article posted on Facebook from "Autism Speaks". I thought it added an interesting perspective and some good insight. However, I know what is stated here could be quite controversial. What do you think??

Melody Latimer
www.ASParenting.com

"There are re-occurring themes among the Autism/Autistic online worlds. The most current, though it comes and goes, is when parents of Autistic kids insult Autism because of their child’s difficulties, summed up by 'You can’t understand because you’re high-functioning/have Asperger’s.'

I’ve wanted to rebut this several times (and often do when getting into a comment exchange on other blogs):
No. I am not like your kid. Because I’m an adult.
No, I am not where I’m at because my parents helped me. I didn’t receive any Special Education or 504s or anything.
Actually, when I went to college, this is where I found that I couldn’t even stand on my own two feet.
I have had to have several years of therapy and medication, much thanks to my husband, to overcome my previous years.
For years, I couldn’t even do household chores because of the resulting, built-up anxiety and stress.
Yes, I do know what it’s like to have a child who doesn’t speak.
Daniel didn’t speak until 4.5 yrs.
Daniel’s speech is sometimes even now unintelligible by me, and most of the time by those who do not interact with him on a daily basis.
It can take Daniel up to two minutes to form a six-word sentence. This is greatly decreased in the past year since getting his iPad.
Yes, I know what it’s like to have a child who still has to wear a pull-up.
Despite being a 2E child, Stephen is not fully potty trained.
I’m not sure he even feels it.
He will be seven in just over a month.
Yes, I know what it’s like to have a child who elopes.
The first week after we moved back to Texas, Daniel escaped from the house and walked to the grocery store around the corner.
Daniel will run away from you and every other adult without paying attention to what’s in front of him.
He has nearly been hit by a car several times.
We now take precautions.
No, just because I believe in Autism Acceptance doesn’t mean I refuse to get help for my kids.
Both boys have IEPs.
Both boys had early intervention.
Both boys continued with OT, ST, and Daniel PT after aging out of EI.
Daniel has had ABA to deal with dangerous behaviors.
Stephen has had DIR/floortime to help with his imaginative play skills.
No, we no longer do therapies outside the school directed by a professional. (I decided at some point, kids need to be kids, no matter their disability.)
Yes, both of my children are on medications. One for ADHD, the other for sleep and calming issues.
Yes, I do know what it’s like to not sleep at night because my child is awake all night.
Yes, I know what it’s like to be afraid of my child because he’s become that violent.
Yes, I know that all we want is what’s best for our kids.
That does not mean I will chelate them.
…cure them.
…destroy their sense of self by removing all traces of Autism.
…destroy their self-esteem by saying their reactions to things are wrong.
…drug them to control their behaviors.
Yes, I know what it feels like to watch my child bang his head so hard that he could cause permanent damage.
Here’s what I don’t know ... I don’t know why this would make me hate Autism. I was so thankful to know what it was. What was causing my children not to speak. What was causing them distress and unrest. I was happy to know there was something I could do. That’s what the Autism label is to me. An answer to 'what’s going on.'

What I do know is that there is no amount of hate of Autism that will make your child better. There is no amount of vitriol put into treating your child that will not radiate to your child. There is nothing you can say that I have not been through myself, with one of my children, or have seen one of my friends go through.

What you’re going through may have different manifestations. What you’re dealing with at this second may have so much stress attached to it that it seems like there’s no end in sight. But you can get through it. You can accept your child from where they’re at. And once you do that, you can truly start to help your child because you’re not going to be forcing a round hole through a square peg."

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Melody's post was previously published at ASParenting.com
Posted by Shannon Des Roches Rosa at Wednesday, February 29, 2012

"Spirited Away" - A post on Verbal Stemming

This is a post I found on a different blog that gives great insight on how autistic people use verbal stemming to cope with their surroundings. I wanted to share it here because it was so well written and explained. Enjoy!!

"Spirited Away"

Playground Predicaments

One of the most heartbreaking situations as a parent of a child with autism happens at playgrounds. I usually encounter at least one child that comes up to us wanting to play with Keegan. A lot of times they look like lonely, only children that just want some interaction with another child. It breaks my heart in almost every outcome. Sometimes the child just sticks around constantly asking questions such as: "Why does he talk like that?", "Why is he running away?", "Why doesn't he want to play with me?" Other times the child will look disappointed and sad as if it hurts his/her feelings that Keegan won't play with him/her. Very few times, the child will actually try to understand how Keegan is and still want to play with him. They will try to interact on Keegan's level, often looking at me with hesitation. Keegan isn't very good about picking up social cues from strangers. So, I will say things to help both Keegan and the child know how to interact. I will encourage Keegan by saying "This boy wants to play with you." "Maybe you should play chase. He's going to get you!" Other times, Keegan will want to interact with children and usually scares them off. I will hear the child say "Leave me alone!", "Stop following me!", "He's weird". No matter what the outcome, I try to stay positive. I try to use it as an opportunity to educate parents and children about autism, and being different. But, there is always that little, sometimes large part, of me that is saddened that at age 7, my son has never had a friend. It's a constant reminder that my son is different and that we will struggle with this the rest of our lives. But, it's encouraging to know that we will have so many opportunities to teach children how to accept someone for who they are and enjoy themselves despite the set backs and circumstances. Most of the time it may fall on deaf ears, but if even one child is able to understand this important lesson with the help of me and Keegan, it's all worth it. I wish more parents were understanding of differences between people so that they could pass on that lesson to their children. It's frustrating to encounter people who don't understand. But, what a treasure it is to meet people who DO understand and DO get it. These are the people that give me hope in humanity. And, as for the others I'll just keep trying to educate them and pray that they someday, somehow will understand. The ones who don't understand are missing out on such a neat part of life.

"No Myths"

This is a great video that says so much in a short time. Enjoy!!

We Cannot "Cure" what is not a Sickness or Illness. We Cannot "Fix" what is not Broken.

I've been doing some research to try and gain a better perspective through my son's eyes. I've done so by reading comments and blog entries that were written by autistic people. They have so much to say and feel that no one will listen now that they are adults. What a shame. We (as in "normies" or "neuro-typicals") are dedicated to helping our children with autism. We are committed to helping autistic children communicate and blend in with the world. When we hear that someone is autistic, don't we feel sorrow? Don't we feel at least a little pity? But Autism doesn't have to be a negative thing. Just because someone is autistic doesn't mean that they are "broken" and need fixing, or are sick or ill and need to be "cured". Autistic people simply think differently than what is deemed "normal". They have their own perspective. It's a very unique and special perspective. Just as we seek to help autistic people communicate and function "normally", our approach should be different. We should not help them out of sorrow or pity. We should not help them out of guilt. We should not help them so that they are easier for us to deal with. But, we should step back and see what these amazing people can teach us. We should be joyous in our differences. We should be thankful that we have people who are "different" and can present a new perspective on life. We want so desperately to help these children be successful. But, then what? What when they are adults? What when they have learned to talk and communicate? We shut them out? We close the door? We make them feel isolated once again by ignoring what they have to say once we have helped them find their voice? We want to teach these children how to communicate, how to tell us what is on their mind. Then, once they can, we turn our backs?
I have to ask why we deem it so important to help autistic children. The are not sick. They do not need to be cured. They are not broken, nor do they need to be fixed. They are human beings. They have thoughts, feelings, dreams and struggles. They are not that much different than you or I. They learn differently. They perceive differently. That is all. And once they are given our help and made successful, we should rejoice with them. We should be happy that they over came such great obstacles in order to be an independent adult. And most of all, we should listen to what they have to say.
As a mother of an autistic child, I want what any parent wants for his or her child. I want to see my son grow and shape into the best person he can be. This is what any good parent wants for their child. It's not about what I hoped or dreamed Keegan would become or accomplish with his life. It's not about how ashamed or embarrassed I am about how he acts in public or behaves around peers. It's not about me. It's about this precious little boy who desperately wants to be heard. He wants love and attention, just like any child.
I am so saddened that autistic adults have been ignored. What insight they have! They have so much to offer in behavior techniques and other intervention tactics. They are a big piece to solving the puzzle and mystery about autism. They are the product of hard work; not just ours, but their own. Why on earth would we want them to remain silence? I will listen. I will read what they have to say. I will cry when it touches my heart. I will read with an open mind and an open heart because I want to understand. It's not about me or how what they have to say makes me feel. If what they have to say makes me feel badly, so be it. They have insight and a perspective that is new to me. I'm sure I've acted or did something wrong when I lacked understanding. We all are guilty of that at some point or another in our lives. What makes the difference is how we respond to our wrong doings, or wrong thinking. We can either decide to embrace the new information and adjust our life and thinking accordingly. Or, we can be bitter and resentful and play the blame game. I chose the first option because it's the only option that allows me to make positive progress. I am no help to my son when I am busy being angry, hurt and resentful. When I think about how much I have to teach my son; how far behind he is from his peers, I am reminded. I realize how far behind I am, and how much I have to learn. It's all a matter of the way we think. I choose to think differently. I choose to understand autism and those who excel with it.

Black and White Thinking

One of the biggest daily battles my husband and I have with our autistic son is the fact that he's a black and white thinker. We have to constantly readjust what we say and what we do and make sure that it's something that can stay consistent so that we don't confuse our son. One struggle recently has been the changing weather. Last week it was very rainy and windy most of the week. My son loves to go outside and play on our patio, and he will stay out there most of the day if we let him. It's covered and has solid walls surrounding it. So, it's safe place for him to play, even if he insists on playing out there in the middle of a rain storm. He was home sick last week and decided to dress himself with yesterday's attire: a short sleeved shirt and shorts. He then wanted to go outside and play on the patio. He resisted my telling him he must change into warmer clothing if he wanted to go outside and play. I told him it was too cold outside to wear shorts and a shirt. Pants and a coat are needed to be worn when it's so cold outside. Each time I'd explain, he'd respond with getting upset and fussing. I held firm and finally he caved. He put on some warm pants and a coat. However, today the weather is gorgeous and it's too hot to wear a coat outside. However, my son insists on wearing his winter coat out on the patio because now he thinks that's a set standard of what he should wear if he's out there.

One morning it was very chilly. It was almost cold enough for there to be frost on the ground, but not quite. I could see my breath when I exhaled and the grass and ground were damp outside, but no frost. I had my son put on his winter coat before I walked him to the bus stop. However, when he returned from school in the afternoon, I found that even though the weather had warmed up significantly (just over 100 degrees Fahrenheit) he still had his winter coat on. The bus driver felt bad and tried to explain that he would not take it off. I understood of course, and put her mind at ease. However, once Keegan got off the bus, it took me 15 minutes of sitting out on the sidewalk, convincing him that we could not start walking until he took his coat off. I kept telling him it's too hot to wear a coat outside and that it needed to come off and be put into his backpack. He was convinced that since he walked TO the bus with his coat on, that he should walk FROM the bus with his coat on. We had about 1/4 mile to walk back to our apartment, and it was not feasible for him to wear his coat in that type of heat. I had to stand firm, and he finally caved. I am convinced that I will need to write some social stories for him to explain weather changes and the different types of clothing that is needed for each circumstance. I hope they work. I found out about social stories for the first time last week. They are such a great idea! I am eager to give them a try and see if they work. My current struggle is the fact that I do not draw very well at all. LOL So these stories will have very basic pictures, but hopefully they will get the message across. (= Thanks for reading.
Take care and God bless~